Implementation Science Workshop: Engaging Patients in Team-Based Practice Redesign - Critical Reflections on Program Design (original) (raw)
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As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation" with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term 'patient engagement gone wrong. ' These examples have been anonymized and presented as four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.
Research Involvement and Engagement
Background Medical societies and funding agencies strongly recommend that patients be included as partners in research publications and grant applications. Although this “top-down” approach is certainly efficient at forcing this new and desirable type of collaboration, our past experience demonstrated that it often results in an ambiguous relationship as not yet well integrated into the cultures of either patients’ or the researchers’. The question our group raised from this observation was: “How to generate a cultural shift toward a fruitful and long-lasting collaboration between patients and researchers? A “bottom-up” approach was key to our stakeholders. The overall objective was to build a trusting and bidirectional-ecosystem between patients and researchers. The specific objectives were to document: 1) the steps that led to the development of the first patient-partner strategic committee within a research center in the Province of Québec; 2) the committee’s achievements after 3...
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Patient involvement in various aspects of healthcare, from improving healthcare quality to promoting patient safety, has emerged as a critical priority, but understanding how best to engage patients is not well-understood. This knowledge gap results in frustrating barriers for decision-makers looking to draw transferable lessons to inform the design of patient engagement programs and processes. Coupled with challenges to the sustainability of health care and the need for innovative solutions, patient engagement has become central to improving both quality and delivery of services. This thesis is comprised of three independent studies that form an overarching program of research. The first study reports the results of a scoping review to understand how health systems are investing in building the capacity and ability of patients. In the second study, we build on the findings from the scoping review and a series of qualitative interviews to inform a provincial survey tool to understan...
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Over the last few years, the role of patients in the health system has become essential to improving the quality of care and services. However, the literature shows that patient engagement is not always ideally applied to improve the quality and safety of care and that patient engagement can be tokenistic. Through experiences conducted in Quebec, it is possible to outline a structured process involving both professional stakeholders and patients that illustrates optimal conditions to be applied for successful teamwork involving patients. Résumé Au cours des dernières années, le rôle des patients dans le système de santé est devenu essentiel pour améliorer la qualité des soins et des services. Cependant, la littérature montre que l'engagement des patients n'est pas toujours réalisé idéalement pour améliorer la qualité et la sécurité des soins et que l'engagement des patients peut être symbolique. Au travers de l'expérience menée au Québec, il est possible de faire ressortir un processus structuré portant à la fois sur les intervenants et les patients, qui permet de mettre en oeuvre les conditions optimales à une réussite du travail d'équipe incluant des patients.